COVID19 and Chronic Illness: life on the edge of uncertainty

“Life can change completely in an instant.”

Many of us are probably well acquainted with this idea. A tiny niggling pain, a doctor’s visit, a diagnosis – and suddenly, nothing will ever be the same again.

We constantly live on the edge of this uncertainty. All of us – every day, every minute.

Covid19 and chronic illness

For as long as I can remember I have known I will not have my mum forever, and yet that split second phone call during my lunch break at work when I heard she had a mass in her pancreas still changed everything.

For as long as I can remember I’ve devoured books where dramatic things happen. Kids die too young; people are wounded in battle; last minute inheritances save the day; all is lost and all is rescued over and pver again. Yet I still remember exactly where I was when I found out that my ten year old friend had died suddenly from an undiagnosed brain tumour.

Likewise, I suspect that while many of us may “know” the speed with which reality can be remade, these past few weeks of of COVID-19 have also come as a bit of shock. No one really expects a pandemic. Not many people imagine that soon their actions – perhaps already severely curtailed by disease or circumstance – will be hedged further by governments seeking to prevent disaster.

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My husband has chronic inflammatory disease (Katie’s story)

“There are people willing to be with you during the dark times.” May this interview be an encouragement that there are others out there too, struggling to love and seeking to give, all the while figuring out what it looks like to do exactly that.

It’s time… for the first interview with another watcher!

The blog series Another Watcher’s Story is a compilation of interviews with other people just like us who are in a relationship with someone suffering from a chronic illness: mental or physical. They may or may not be in an ‘official’ caregiving role, but they have a unique tale to tell.

The purpose of this blog is to remind us that we are not alone.

So without further ado, let me introduce Katie, a wife whose spouse struggles with chronic inflammatory disease (and also the founder of a wonderful ministry: Broken and Mended!)

My husband has chronic inflammatory disease

1. How does your husband’s illness impact his life? 

He is always in pain to some extent. It limits his ability to join in some family activities, but not too many. 

2. What has been the hardest part of Watching them?

The way it has taken so much of his energy and focus away from other things. He is using it for the glory of God and so I am proud of him. He is, however, focused on things many people in the 40’s do not have to even think about. 

3. How has this impacted you?

I have had to adjust my expectations. We are still working out how this affects our relationship and our family. 

katie's story inflammatory disease chronic www.calledtowatch.com #caregiver #struggle #chronicillness #writer #hope #chronic #faith #watching #spoonie

4. What have you learnt as a result of this relationship?

To be more supportive. To realize that he has limitations and I have to respect those. 

5. How has God been present in this relationship?

Every step of the way. We both acknowledge His hand is how we found out about his disease. We believe he has lead David to start the Broken and Mended ministry. 

6. Have you seen any fruits or purpose for their suffering so far?

We see how he and I can relate to others who are suffering. 

7. What does Jesus mean to you? What aspect of his character has impacted you the most?

Jesus is my rock. I can not imagine going through any of life’s difficulties without him. I know that he understands each hurt and disappointment. I trust him with my future and know he will bring any good possible from this situation. 

8. What’s the best piece of advice or encouragement someone has given you? How have they shown they love you?

Early on we had friends who would help out with the kids in order for me to be with David for doctor appointments and surgeries. It is wonderful to have a network around you to help manage life that cannot stop when you need it to. 

9.   What piece of encouragement would you give someone in a similar situation to your own? 

There are people willing to be with you during the dark times. You do not have to pretend that you are okay with what you are facing. Lean on God for strength.

THANKS Katie!

// Are you a Watcher? If so I’d love to hear from you. Please don’t think your story isn’t exciting enough, or your loved one’s affliction not devastating enough! There are no wrong answers! Contact me at gloryafterwards@gmail.com to be part of this series (you can remain anonymous!)

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Why I feel uncomfortable when people offer to pray for healing (even though I’m a Christian)

“I’ll pray God will heal your friend.”

“I’ll pray God will heal you.”

Sometimes these promises make me feel uncomfortable. Have you ever been on the receiving end of an offer for prayer? I’ve used the word “offer” but it’s more of a statement really.

After you share the health struggles of yourself or someone close to you with a Christian friend, there’s often silence. And then –

“I’ll pray for healing.”

How does this make you feel? I’m embarrassed to admit it, but often it leaves me feeling uncomfortable. Here’s why:

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Why we need to celebrate small things

“Perhaps God is strong enough to exult in monotony…
it may be that God makes every daisy separately,
but has never got tired of making them.” – G. K. Chesterton

There are 2 types of people. Those who celebrate EVERYTHING and those who wait for the really big, land-mark events before they break out the confetti.

I admit I am often one of the later. I don’t want to celebrate prematurely, I want to wait until I’m sure it’s something worthy of celebrating… and as a result, I don’t celebrate much at all!

The problem is life doesn’t always bundle achievements or seasons into boxes. There is often no neat, conclusive ‘end’.

This is especially true with Chronic illness. When you can’t celebrate healing or an ending, it can be difficult to celebrate at all.

And yet I think we are called to celebrate, even when there’s no miracle or no big event. Why? Well I could talk about being positive and practicing self-care and embracing your life and all the rather ‘in’ phrases at the moment…. but I want to give you more concrete reasons.

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Why small talk is so important in chronic illness (& why I neglect it!)

A while ago I read a fascinating article about phatic communication, or ‘small talk’. Phatic communication is speech which serves a purpose other than that implied by the words used. An example would be the question, “how are you?”

What this question is actually asking is, “how are you physically/mentally?” Yet how many of us actually answer this? And why don’t we?

It’s not because we’re being rude or ignoring the question. In fact, often askers are surprised when someone lists their current physical health in response! It’s because we understand that in our social context the question is often merely a greeting, a social nicety which has to be used before the ‘proper’ conversation can begin.

An example of phatic communication (small talk!)

Often when I run I call out a (breathless) ‘hi!’ or ‘good evening/morning!’ as I pass someone by. About 3 times out of ten, someone will reply. Out of that 30%, at least half reply with ‘good thanks’ or ‘I’m well thanks’ – despite the fact that I never asked if they were!

This is because they are so used to ‘how are you’ being part of ‘hello’ and other social niceties (or nonenties!) that they assume I’ve asked and thus reply automatically.

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How chronic illness changes your perspective of home (and what to do about it)

Home is where your heart is. Your home is your castle. Home away from home. Home sweet home…. the sayings go on.

We assume home is a safe haven, a place of refuge and rest. Yet when chronic illness is involved, even our understanding of ‘home’ gets complicated.

“Is home a place of rest for you, if your Mum is ill all the time and you never know how she’ll be?”

A long time ago, somebody asked me this question. I was indignant. As a teenager, my thoughts ran like this: Are you suggesting that I come from an unhappy home? Firstly, it’s none of your business, and secondly I have a good family and a good home –

The truth is, I did (and do) come from a “happy home”. Yet the question made such an impact on me that I remember it all these years later, because it was something I’d never thought of before:

How does chronic illness in the family affect the definition of ‘home’?

Or, to be more personal: how does your family member’s struggle with chronic illness affect your home life?

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Why you should attend your loved one’s doctor’s appointment (and how to be prepared)

A while ago someone I know was diagnosed with a chronic illness. After the initial diagnosis, she had to make an appointment to see yet another doctor. Before this appointment, I was chatting with her daughter and realised something rather abruptly: there is an art to accompanying someone to the doctor.

I’ve been to many doctors’ appointments in my life, both for myself and others. I’m neither proud nor ashamed of this, but I AM used to them.

And perhaps, not everyone is.

As a Watcher, a doctor’s appointment raises several questions: If it’s not for us, should we go? Is it important that we be there? What is our role? Are there reasons we shouldn’t attend?

Every situation is different and so is every person. I don’t think there are right or wrong answers, but I also think we can be a valuable asset at a doctor’s or specialist’s appointment. Here’s why:

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How to write a Get Well Soon card (to someone with a chronic illness)

Get Well Soon cards are great for broken legs and pneumonia – but do you do when someone won’t ‘Get Well’ (soon or otherwise)?

If you’ve ever browsed a two-dollar shop (as we call them in Australia), you’ll know there are many types of cards you can purchase.

Happy Birthday; Congratulations on your baby/engagement/anniversary; My Sympathy; and Get Well Soon cards. This last category can be somewhat disconcerting in the context of a chronic illness.

Of course, the easy solution is to buy your card without those words printed on the front.

But the problem goes deeper than that – what do you write in a card for someone who’s not going to get better? Should you send a card at all? How often? What’s the point?

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How to make hospital visits less awkward

I’ve spent quite a bit of time in hospitals, both visiting Loved Ones and working. It’s made me realise that visiting someone in hospital is not quite the same as taking someone out for coffee or popping over to see someone at their house.

In fact, for many of us, visiting someone in hospital might be a novel, somewhat unsettling experience. Perhaps we have bad memories of other hospital visits, or perhaps we’ve never been to one before.

For others of us, a hospital visit might seem easy and we don’t understand why we can’t just pop in at any time with whoever we like.

While neither perspective is ‘wrong’ (and I have held both at different times) they can both miss the point.

Visiting someone in hospital is not about us, how easy or difficult it is, or how it makes us feel.

Visiting someone is about loving them.

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How to love a chronically ill EXTROVERT

We’re all different and unique. Some of us are introverts, and others of us are extroverts. In the normal scheme of things, we can navigate our differences. But what happens when chronic illness is thrown into the mix?

Introverts are well known for being ‘quiet, bookish types’ and extroverts for being ‘raging party animals’. Of course, it’s not that simple. Still, an easy definition (and the one I’ll use for this series) is:

Extroverts obtain energy from being around people.

Introverts re-charge from being alone.

Yet if chronic illness limits an extrovert’s socialising opportunities, how are they supposed to ‘re-charge’? How can we care for and love a sick extroverted friend?

Keep reading for FOUR thoughts and FOUR practical tips…

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